Oh Blog - How I have Neglected You...2 Revisions Later

It has been a roller-coaster.... Since my last update, I have had not one, but two revisions to document for you. I so wish I'd felt up to blogging along the whole time...but just couldn't seem to get it done.

In September, I did experience lead migration which required surgical intervention. This surgery was in October, 2012. This surgery ended up being much more involved than originally planned and riddled with small complications.

FIRST REVISION

In addition to replacing the leads in my head, the decision to relocate my battery was made immediately pre-op. It was previously in my chest, which was fine in the beginning. But, with the slight weight-loss from additional activity, the corner of the battery would often protrude and bruise with with minimal movement of my right arm. So, the decision was made to place the battery in my right upper buttock during the procedure. (Which has been so much more comfortable than I thought it would be.)

Because it wasn't planned in advance, when they moved my battery, it turned out the leads they had on hand that day were not long enough to go the full distance and they were forced to add an extension connection around my shoulder blade area.

Enter complications: The placement of leads in my head, as well as the running of the rest of the leads from shoulder to hip, had to be tunneled several times (at least 4) due to technical difficulties. Apparently, they would run a set of leads, turn them on, and have either errors or failures. Not intending on such a long surgery, after several hours...the surgeon basically had to make the call that 15/16 working points on two leads was good enough and they closed.

So...needless to say, post-op was pretty rough. And on top of the soreness from all of that tunneling...were the staples. Oh the staples!

Since I'd had issues with infection due to the glue on my head in my first surgery, I requested staples be used on my head (and sutures would be fine elsewhere). I guess there was a communication failure somewhere. I woke up with staples in my head, chest, shoulder, and hip... I felt like Sally from Nightmare Before Christmas. I think it was a case of "I already have the stapler in my hand, CACHUNK CACHUNK, and done." It wasn't so bad until they started to heal, they loosen and become sore. (I had them for about 20 days). They also caused trauma to the skin which triggered my Psoriasis to flare at the staple sites.

So, after all was said and done, I was doing alright. I had even better coverage for my pain than before, and I was healing well.

UNTIL...

My stimulator started behaving strangely. I was having a particularly bad headache and thought, "Maybe I need to turn up my stim or change my program..." So, I tried to do just that, only to have the program start to run, or the amplitude start to increase, when the hourglass would disappear, the amplitude would go back to zero. (Not the standard auto-reduction from scar tissue, but completely off.)
So, I scheduled an appt. with my rep. We ran diagnostics and a few more points on the dominant lead were coming back "bad". So, though it wasn't perfect, we reprogrammed using the existing good points and I went home. For a few days, everything was fine. And then, nothing. No stimulation. I checked my programmer and it appeared to be functioning, though I couldn't feel anything. So, I called my rep. Again, we ran diagnostics. Completely different results, but this time, we couldn't program anything. So, they sent me for X-rays to see what the problem was.

The X-rays showed us the problem. The leads were no longer connected to the battery. But not because they were yanked due to slack issues...they were just hanging out in there.

So, third surgery was scheduled.


SECOND REVISION

My second surgery was in January 2013. Less than three months later. I went into this surgery not knowing how involved it would be. I was a giant "if, then" problem, all assuming the diagnostic readings from the IPG were due to the introduction of fluid once it became disconnected.

The Plan:
Possibility 1. If leads are good from extension to battery, replace battery and done. (What we were hoping for.)
Possibility 2. If leads are bad from extension to battery, but good from extension to head, relocate new battery to under right arm (Side-Boob) to avoid re-running head leads and to remove extension from the equation.
Possibility 3. If all leads are bad, replace entire system using long leads (pre-ordered this time) to eliminate an extension to prevent future points of possible failure.

Yup...Possibility 3 it was. The entire system was replaced. Instead of the leads being unplugged as previously thought, instead they had somehow become severed from the battery.

Now, the way I explained this one was, "It was worse than the first surgery, but better than the second."

And this time, though I had one additional incision, (mid-back to run the longer leads) I had staples in my head and sutures everywhere else, so that was much more confortable.

As far as the placement, I'm getting good coverage and we were able to program well. But...

THIRD REVISION (Upcoming)

Unfortunately, as of a few days ago at my second post-op appointment. It looks like I'll be going back one more time. (This time should be far less involved.)  The leads have tethered somewhere around my shoulder (most likely due to scar tissue) resulting in them being very tight in my neck/shoulder preventing me from being able to comfortably look down or put chin to chest. The surgeon's concern is if we leave it, we run the risk of dislodging them from either end, which would be a bigger problem longterm.

I have orders for X-rays and an appointment to discuss the plan of attack.

So...we're almost there. As far as my HC goes,  the stimulator is doing a damn good job of keeping it under control as long as the weather is good, I keep stress low, and I get enough sleep. And the pain from the tightened leads responds to painkillers which is more than I can say for the headaches. So, although it has been up and down...I'd still do it all again.

Throughout this entire process, I've had so much support and assistance from friends and family I couldn't ask for more.

Both my St. Jude rep and my surgeon have both been very patient, understanding, and willing to get this right no matter what.

I could complain, but I would have a tough time justifying it.

I hope you are all well. If you're not, I hope there is relief in your future. Stay positive.

146 Days- Is my head under warranty?

It has been a couple of months since my last update... And there is some reason to post now, so here it goes.

Since my last update, things had been going fairly well. And before I get to the issues, A couple of positive highlights...

The Good

* I have been able to sit at the computer for a few hours and test drive my ability to function as an artist again. It has helped me feel a hell of a lot more like myself. I quickly realized I still have limitations, but it was a start.

* I have been able to start reading books again! So many in the backlog. I get pretty bad nausea and vertigo when I turn the pages or my eyes jump from the bottom of one page to the top of the other, so I am not reading quite as fast as I used to...but if I pace myself, I can get through it without the extreme pain I was in before.

*If all goes well regarding "The Ugly" section...I'm looking forward to attempting additional daily exercise in an attempt to regain a level of health I'm more comfortable with.

The Bad

So, starting around the 4th of July... Monsoon season hit pretty hard here in the desert. It was around that time I discovered that my Stimulation was no match for Barometric pressure. I had some of the most brutal headaches of the past few years, and definitely the worst since surgery. Basically, storms put me on my ass and there was nothing that could be done about it. So, as long as the weather was clear, I was doing alright.

As I mentioned...aside from storms, I also learned that the stim doesn't help when a good ol' fashioned Migraine headache hits. The ones I've known since my teen years. The no lights, no sound, no movement, no talking type. Just a dark room, an ice-pack, and my pain. I get one every few weeks and they don't respond to abortive drugs. The good news is,  I had luck in the past with a preventive drug which I plan on possibly resuming given the H.C. was being fairly well controlled by my stim. The only reason this hasn't happened yet is because scheduling with him is currently a couple of months out, and I had to cancel my last appointment at the last minute due to scheduling conflicts and transportation.

The Ugly

For a couple of weeks, the leads in the back of my head started feeling...odd. There was a very obvious coil that suddenly starting feeling bulging and uncomfortable.

This past Saturday, I was hanging some clothes in my closet when I felt a very slight popping sensation in the back of my head and suddenly my stimulation was in a different location (At the base of my head near my neck at the exact center of my head under the original incision spot) and it was very painful with every movement of my head akin to a tattoo machine. So, I quickly retrieved my programmer and began testing and to the best of my knowledge, the bottom lead (The most effective one recently) has dislodged and migrated. I switched to a program utilizing the top lead only (Which is neither all that effective or pleasant) and contacted my St. Jude rep.

She suggested the first step should be an appointment with her to reprogram and see if we can "recover the stimulation" by I'm assuming moving the stimulation to points on a different area of the lead that may still be in a good spot.

She said they would probably order and X-ray and go from there.

From the folks I've talked to, it doesn't seem likely that this can be remedied non-surgically, but I'm trying to stay positive. Considering how happy I was, I can't even entertain at this point the prospect that 4 months is all I'm going to get before things go south.

So, I'll know tomorrow. Wish me luck, and I'll post once I know more.

[Heavy Exhale]

Almost Two Months since surgery!

And boy has time flown!

So, turns out I'm one of those slacker bloggers that starts out with the best intentions in the world but then life gets going and the posts stop. My most sincere apologies. [Note: You may have noticed that during recovery, I attempted to do mobile updates to the blog, but due to a change in programming on the Blogger site, those appeared as gibberish, adding to the frustration and guilt of not blogging]

But the difference here is the mere fact that life was able to get going! My stimulation was turned on one week after surgery and my life seemed to change overnight.

As I've explained to people...this isn't a cure. BUT...and that is a big but, it is a treatment that allows me pain vacations. I have anywhere from 40%-100% relief from the stimulation. So, I'm doing pretty damn good...most of the time.

Since I have neglected the blog for so long...there are so many things I wanted to explain and recount in detail that I just won't be able to now. But I'd like to occasionally post now when items of importance arise or when things I feel may be helpful to others come up.

Here's a short list of things I wanted to post about in detail and didn't have an opportunity to. I eventually decided I would not have a chance to retro-actively post two months of info and just had to suck it up and update you lovely people! So, if anyone wants/needs more information on any of these topics. Just ask, and I'll expound on it in a later post.

1. Surgery Day Experience/Lead and IPG placement
2. Amazing friends, family and support system who helped me during recovery
3. A heartfelt thank you to those who contributed financially
4. Minor post-surgical infection
5. Programming appointments and fine tuning my stimulation with St. Jude folks

And now the present. As I said, I consider myself to be doing pretty good. I am healing well (Sans some hypertrophic scarring on my chest incision) and I think I'm where I should be in my post-surgical timeline.

I will be seeing my headache specialist and/or pain management doc soon to discuss resuming a drug to prevent my true migraine headaches (Which are much more noticeable now that the constant HC headache is being somewhat controlled) I am getting one every week to two weeks and pre-HC had good results with Topamax. Hopefully it will work for me again.

I am able to socialize with friends over dinner and the like without needing two days recovery on the couch. I  have more energy...not as much as pre-HC, but I'll take it! And I can only think that can improve with time.
I can be a bit more liberal with my spoons/marbles.

I've already lost about 15 pounds since surgery simply from being more active in daily activities. I hope this continues and I look forward to being able to get more exercise in the future, as I gained 80+ pounds since the headache began.

The computer still gives me some trouble after a while, but I've more than doubled the amount of time I can look at the monitor. I can read for a bit at a time too! I'm so excited to catch up on my to-read list.

I can drive for short distances now (That was a recovery milestone I was very happy about) Since I have to turn off the stim to drive, the headache doesn't take long to return and about an hour or two to get under control again, so I keep the trips short.

Basically, I'm starting to feel more like myself again. Or at least feel like I have the opportunity to evolve into a me again. So...as I enviously read on other blogs a few months ago...at this point, I'm so happy I was able to do this, and I'd do it again in an instant.

Again, I apologize for the lapse in posts. I hope I didn't worry/disappoint anyone too much.

The above pics are things friends/family shared with me on social media or purchased for me after surgery. I loved them and wanted to share them here. Below you'll find my immediately post-operative pictures (My incisions were closed with dissolving stitches and surgical glue). I'll try to post some current ones soon so you can see the progression. Thank you for reading, and good luck to you all.